“The success of a life isn’t measured by time”

“The success of a life isn’t measured by time” One of the air ambulance ambos said this to me as they were taking Henry to the airport to be flown down to ICU at the Royal Children’s Hospital in Melbourne.  So much power in that and how true it is.

We knew from early on that Henry’s life would be short but didn’t realise how successful it would be in that short time.  What he taught, the impact he had and the way he made every person that came into his world better was  a privilege to watch.  For a little boy that couldn’t share a word, the relationships he was able to build were extraordinary.

Henry Patrick Holmes was born on the 2 August 2007, the 4^th child in our family.

Henry had a stroke in utero.  He fell under the umbrella of cerebral palsy which literally gave him super powers.  He couldn’t quite leap tall buildings in a single bound but he climbed mountains most of us couldn’t even contemplate.

When I was asked by the paediatric palliative care team to be a part of a Project to develop resources for families having to make the awful decision of end of life location for their child  I said yes with no hesitation.   Let me share our family’s experience which I hope will help other families when they are faced with this challenging decision.

When Henry was 3, we were referred to palliative care at the Royal Children’s Hospital, Melbourne.  When you hear the words ‘palliative care’ you straight away think your child must be dying.  My first meeting with Jen (a Doctor working in Paediatric Palliative Care) put my mind at ease once she explained all that pall care did.  She explained that yes, they support families in the end-of-life stage but it is about quality of life in the now.  What can they do to make sure Henry has the best quality of life.  They provided funding for equipment at home and some in home respite.  For me the emotional support they gave me over the journey is hard to put into words.  We laughed together, cried together and all the in between. We built a relationship full of love & respect. 

In our first meeting Jen asked that when the time came that Henry was at end of life stage where would I like that to be, knowing that Henry would call the shots.  I said the Royal Children’s would be where I would want to be.  The staff had become our family and had been on the whole journey with us.  The other challenging question I had was how would I hand that little boy over for the last time, I couldn’t even fathom that.  Jen said she hoped that they were the people we would want around to help support us through that.   

When the time did come, we were in the Royal Children’s and the palliative care team were there to guide us.  They supported our whole family.   

On 19 December 2013 at the age of 6 Henry died beautifully, surrounded by his family in the location I hoped for, I couldn’t have asked for more. His life was a success, not measured by time. 

I hope every child can have a Henry Holmes ending.